Monday, August 19, 2013

"LIMBO"

This painting was from Christmas Day last year when I had a Nuetropenic Fever. This is when all your counts drop dangerously low, that you can't fight off infection and a high fever occurs. These were the worst. When you have cancer you acquire certain cancer accessories, (cancessories?) that must be nearby at all times. Ex: A thermometer, hand sanitizer, barf bag, pills, weed, etc. Sometimes after feeling chills and taking my temp. I would actually lie and beg my parents not to call my doctor about having a fever, because I would absolutely dread being admitted. I knew that even though I had just spent the last two weeks in bed, sick from chemo, that I would ultimately be sentenced to at least another week in the hospital. That is the majority of a month, sick in bed. And every month, the same thing. Alone in a room, where your days and nights are broken up by being stuck by needles and poked and prodded by nurses and doctors asking you annoying questions about everything, including what your poop is like. lol.

I remember having to be rushed to the Er in the middle of the night, shaking so violently, from a 104 fever that 4 heated blankets could barely warm me up. I remember waking up, soaking in so much sweat, that I could see the imprint of my body on the sheets. Sometimes, my heart rate so high, and my blood pressure, scary low, I would get a headache from hearing my heart beat so loud. It was then, I was convinced the end was near. Feeling that bad, I sometimes would momentarily accept death because I just wanted a rest from all the physical pain. The worst was the utter loneliness of it all. I remember how much that Christmas sucked and my whole family stood in the doorway of the hospital room, with masks on. Watching the nurse take tubes and tubes of blood, as I shook under the blankets. I'd be so anemic that my blood would pour out like water all over the place. In those times, I would realize how alien my body was to me, and how it did what it wanted to. Much like a broken machine gone haywire.

I know that was the first time my sister saw how sick ( she was visiting from Cali) I was and it probably freaked her out a lot. I wonder what my parents told her. When one family member has cancer basically the whole family does. It changes every one's lives. I am lucky to have such a strong, amazing family. I have needed them to be my rock, and they have gone beyond that. I actually had a doctor tell me he had never had a patient with such amazing parents, and I believe it. I remember being miserable, and too weak to walk, and my dad pretending to let go of my wheelchair in the parking lots. I love my dad for his dad jokes and you really need to keep a sense of humor as much as possible, because this is life no matter how much it didn't go our way, it is still life. We are all still here! My dad is an Irish singer so his schedule, being pretty flexible, would take me to chemo everyone morning at like 6 am to mass. gen. He was so popular with the nurse staff because he is just so rad! If you've met him, you'd know. I've always been the eldest daughter and it is hard to show how weak I am to my brother and sister. I guess that's one of things that I hate the most about cancer. I have met so many amazing people who happen to have cancer and although visually appear physically weak inside are so fucking strong and inspiring. I hate the idea of a poor little cancer patient as a victim. Although our bodies are failing our minds are very strong.

Unfortunately, I got these damned Nuetropenic fevers almost every time I did chemo last year. During these fevers, I would have to be isolated for about a week and a half. I often, was so sick, I felt somewhere between life and death. Sometimes, I still feel like that when I am sick or how my whole life revolves around getting "better". Everything else has been put on hold. Sometimes, I think I would rather be in jail. At least then I would be able to think about getting out. I used to think it would all be Temporary but its been almost 3 years since my diagnosis and I can't see a light at the end of the tunnel anymore. I'd be foolish to do so after cancer has repeatedly slapped me in the face every time I get my hopes up about ANYTHING.

This past week I was reminded after having to stay inpatient again at Sloan Kettering, at how old it gets spending your days sick in bed at the hospital. This time I wasn't nuetropenic but after continuous vomiting, a fever, and a sharp pain in my stomach I took a cab to the hospital to get some help. To my surprise my doctors discovered I had Appendicitis! I was sent down to get scans and while I sat in the wheel chair waiting, I prayed it really was Appendicitis and not a tumor in my stomach. Hearing it was Appendicitis was actually a relief! At first I was told that I'd be going straight into surgery which I wasn't that upset about since I've been through so many worse surgeries in the past 2 1/2 years.

I'm going to count them for "fun":

3 biopsies in left foot to find out if it was cancer and what kind. I was awake for two of these where they removed bone and tissue from MY LEFT FOOT, I had never been in so much pain as that second one and actually screamed and cried the whole way home.

3 Port surgeries. One to have it implanted when i was diagnosed, one to have it removed where i was told to celebrate because i was done with chemo... One to have it re implanted after I relapsed and had to start chemo again.. Although that one hurt the least, it was the saddest.

Pelvic lymph node biopsy where I was also awake and had a needle the size of a sewing needle stuck through my hip. watching on the screen was pretty surreal.

Surgery on the back of left knee and left pelvis, where about 30 lymph nodes were removed. This was a big like 9 hour surgery. I basically had to learn to walk again right after and had tubes and bags of blood coming out of my leg for about a month. no fun and really gross especially when the doctor pulled them out nice and slooowwww.

Surgery to have my ovary moved over! Yes that's right, before I relapsed my radiologist suggested I move one of them over so it wouldn't get fried during pelvic radiation.

In the end, I ended up, not having surgery for the Appendicitis and Colitis that I was told I acquired from Irinotecan (chemo drug). My guts were all inflamed and I was treated with antibiotics and no eating or drinking for about a week. I was put on a strict diet of just mouth watering ice cubes! mmmm. After awhile I was allowed to have clear liquids. Apple juice and broth never tasted so good!

I am lucky to have had all the visitors that I did. I had so many! It made my time go by so much faster. So if you came to visit me although I might have acted loopy because of the morphine, it meant a lot. I really have the coolest friends. Also my mom came down again, and I don't know what I would do without her. She is the most selfless, talented, and genuinely good hearted person I know and has been by my side in Nyc this whole difficult summer

I'm glad that all this shit happened before my art show and not during, because although I'm nervous to share such personal pieces , I am so excited to see the paintings (which I finished in the hospital) all together and see old and new friends all in one room. I think its going to be a bit overwhelming but in a really amazing way. It feels so good to have something to feel good about after constant sadness! There will be old college friends there and people who I've never even met, but feel like i know so well, because of their consistent encouraging emails and facebook messages. It is so nice to have set a goal and actually accomplished it. To feel a sense of control for once! This could very well be the biggest day of my life. Who knows? Although I don't look to far ahead anymore, hopefully this is just the beginning of things to come.

Thursday, August 15, 2013

I was asked to answer some questions about my work for a New York/Brazilian Blog, Taxi Amarelo. http://www.taxiamarelo.com.br Here it is in English!:

What has been the role of painting in these difficult days during you treatment?

Painting these works has been an outlet for me to confront the reality of living in this cancer world that most people don't understand and don't like to think about. I'm not much of a writer, so I express myself through my art. It has been very therapeutic to tell my story through paint and really put it all out there, but also leaves me feeling very vulnerable. I want the viewer to get a better idea of the reality of cancer and what it's like to live with it, like so many admirable people do. I want other cancer patients to be able to identify with them and not feel so alone. Cancer has an ungodly way of making you feel so utterly alone.

Was it a natural decision to continue painting even after the diagnosis? Also, You chose

to paint mostly self-portraits. How was that process and how did this choice happen?

Before my diagnosis I had a studio in Brooklyn, where I painted large oil paintings of other people. After my diagnosis I had to move in with my parents, get rid of my studio, and couldn't really be around oil paint or turpentine because of the odor and toxicity. My whole life drastically changed with that one cancer diagnosis phone call. From then on I found myself feeling very isolated in this "cancer world". My treatments have been absolutely brutal and many times I felt I was on death's door. I found myself truly alone with myself, confronted with extremely tough and heavy thoughts that cancer threw in my face. As my treatments continued, the less I could relate to my old friends and work.

I started using watercolors because I could paint in bed and they had no toxic odor to make me nauseas. At first I painted weird little images from my heavily drugged brain, avoiding thinking about cancer and death as much as I could. I was using painting as more of an escape at the beginning. I have always been a portrait painter and knew I would sooner or later have to paint a bald self portrait. I had to. Thats how this series started. From then on I became more passionate on telling this story especially after my cancer spread to my lungs in January. Since then I understood what the word "terminal" meant a lot more. Feelings and thoughts that I had pushed away because I innocently thought I would be "cured," now had to be dealt with and I took to my watercolors. Cancer has unfortunately consumed my life and I needed to address this with my work. I can't explain how scary and alone cancer is but hope my paintings do. I'm not trying to sugar coat anything with these pieces. They are not happy paintings, but they are real, and I believe other cancer patients can relate to them.

Although you've been transforming the illness into poetry through this work, it must have

a very painful side to record these moments. Are the paintings helping you cope?

Yes, they do help me cope. My ability to paint is really one of the only things I have left now that my health is gone. They give me a feeling of accomplishment. Cancer took away my ability to have a job, it has made my social life pretty difficult and I don't even try to think about a future because I have been burned too many times by this disease. I spend the majority of my time sick and suffering and sometimes I think "what is the point of this? Why go on?" but my work has given me a reason to go on, to tell my story that I feel goes beyond me. Yes, my paintings are mostly self portraits but I'm using myself as a subject to reach out to others who are in similar pain, struggling to survive. I have been so blessed to meet other cancer patients who are such amazing people, who have similar struggles, and who I can really relate to. They have helped me put things in perspective, not give up, and really appreciate what I do have. Many, whom I've had the honor to paint.

How do you think viewers will react to this new phase of your job?

I have been blown away by the response to my work by so many people! I know they are difficult for my family and friends to look at. They are very intense and personal but I'm being as honest as possible. I think they also make them proud of me, which alone is enough for me to live for. Other patients and even strangers have reached out, telling me how much my work has touched them. I've even been told they have made them cry. I can't think of a better compliment to an artist, that a painting could move them that deeply. As I type this I am literally stuck in the hospital, sick from the side effects of chemo but my heart is light as I look forward to my exhibit next week. Having these paintings to express myself and reach out to others fighting gives me a reason to live, it gives me goals and makes me feel like i'm accomplishing something when so many things in my life have been taken away. When I'm gone, whenever that may be, my work will still be able to speak for me.

Friday, June 7, 2013

It sucks always feeling sick, and tired. I miss going out with my friends in Brooklyn having some drinks and sharing a laugh. I miss spontaneous, Nyc nights where you don't know whats going to happen but end up meeting cool people and having a wonderful time. Summertime is hard when you are weak and sick. I feel like the kid stuck, grounded in her room looking out the window at all the kids playing. I am in bed most of the time. When I'm feeling moderately up to getting out, I go for it! Friends can't tell by looking at me but inside, my counts are really low and it can be dangerous for me to catch a cold because I barely have an immune system to fight anything off. My body is always in pain. When I go do something I have to take into account if I'll be able to sit down, which is a must. I make sure I have ritalin, weed, oxy, and some Ativan just to keep myself feeling stable. I'm good at chilling out and going for little walks but i long for the day where i can ride a bike or go swimming again like I used to. All my friends are busy gong to their jobs like a normal person. My job they tell us at Sloan is literally trying to survive by doing chemo everyday. It's a weird way to live, i think everyday on my ride over the Polaski bridge to the hospital. Surreal that after 2 non stop cancer years its hard to see an end at the light of the tunnel anymore. I don't make plans for my future anymore unless its a month at the most. I am just grateful right now that my treatment is working. Grateful for my friends and family keeping me going. Hopeful about my artwork and having a voice about whats happened to me and does to so many others.

Thursday, June 6, 2013

Before Chemo I didn't understand how horrible Nausea was. I am constantly sick to my stomach and puking all the time. I sleep with a barf bucket next to me and last year had to have a barf bag with me whenever i was in the car. i have thrown up on the street, in parking lots, in restaurants, at friend's and families houses, on myself. I have thrown up while crying because i cant stop throwing up. The worst is that unlike vomiting after a hangover, vomiting from chemo just makes you feel worse. The nausea stays with you and after feeling sick to my stomach with no relief for over a week at a time it starts to make you crazy. I take anti nausea pills like Ativan, Zofran, Compazine, Visiril, Marinol, etc. These all work to an extent and then you gain a tolerance or the actual pill can make you puke. The only thing that has truly relieved my nausea and has actually allowed me to eat is good old natural Marijuana. It calms your stomach almost completely for the time you are high. Not only that, but it relieves the bone and muscle aches that possess my body. Lastst year I was so sick I could barely move and was left in bed to barf and think about how horrible i felt and looked and how much my life completely sucked. Weed helped distract me. It helped me paint and draw when i felt so uninspired by my surroundings and situation. It would actually help me talk to my parents and sometimes even laugh. in a way weed helped me really analyze what was happening to my life in almost therapeutic way. Really make me think of things that i normally would not confront and push out of my mind.
I'm lucky I know the right hook ups because disgustingly NYC has still not passed Medicinal Marajuana yet. Other states have: Alaska, Arizona, Califonia, Conneticut, Colorado, DC, Delaware, Hawaii, Maine, Masachusetts, Michigan, Montana, Nevada, New Jersey, New Mexico, New Hampshire, Oregon, Rhode Island, Vermont, and Washington.
I think its really shitty that people that don't have cancer are making laws holding a medicine from us that real changes my quality of life. I feel bad for kids i see with really square parents who believe the taboo against weed and won't let them have it and watch them get real poison in their bodies that makes them feel horrible and antidepressants along with a million other pills made all of chemicals.
You don't have to smoke gang. I have a vaporizer that works wonderfully called the pax and can be brought wherever i want. You can also cook weed and make delicious cookies, brownies, whatevs. I have been putting hash oil in my soup. I'm hoping the day comes soon when i will have a medical marijuana card and be able to pick out what kind i want or lollipops or tinctures. I'd like to get pure, clean weed. I'd like to pick the kind. Sativa helps me a lot while Indica makes me too tired. Till then I'll get it from the streets not really knowing whats in it but knowing it makes me feel hell of a lot better!!

Tuesday, May 28, 2013

Thursday, May 23, 2013

This painting was done after the worst day of my life. On January 14th, after only one month off of treatment and celebration of my new "Remission". After more than a year of chemo/hell, surgeries, and radiation. After the loss of my life as I knew it and just as I was starting to have hopes and plans of a new one, I found out my cancer returned and had spread to my lungs. I have 3 hospital bracelets on because upon getting this news I had to be admitted to a Psych Ward. Apparently, saying: "What should I do now? Jump off the roof?'' is taken very seriously even when your dying. Of course you are going to have a suicidal thought or two after having your heart and hopes crushed into a million pieces. Sitting in between my two sobbing parents with my Doctor basically in tears holding my hand. I don't think anyone that has gone through this hell has the right to judge or know how they would handle this news in that MOMENT after what I had been through. It pisses me off because trying to survive is a lot harder than anyone without cancer could ever understand. I wouldn't be putting myself through this hell if I was going to off myself. I wouldn't do it to my parents. I guess I never really thought cancer could kill me, like it does to so many, until that moment.

Life has been completely different since my relapse. For five months I have thought about my death a lot. The stress and depression of relapsing put me down to 99 lbs. I don't want to die but I see it all the time now. What makes me any different? Nothing. Cancer doesn't care. Why do some cancers leave you alone while others return with a vengeance? It certainly has nothing to do with Karma, or Religion, or age, or how good of a person you are. I see it with my own eyes everyday at the hospital. Yesterday at Sloan they had dresses and suits for all the kids in Peds for a hospital Prom. Many of them will never get a chance to go to their real one. It makes me feel fortunate that even though there is so much I want to do, I need to remember I have been lucky to have gotten to do a lot in my life. Relatively.

I dream of a day where I have long hair, can dance, not feel sick and exhausted all the time. I said goodbye to any dreams of having kids, getting married, or seeing 40 after my relapse. I do think Ewing's Sarcoma will get me in the end. I'm just hoping that If I keep staying alive, new drugs will keep coming up to extend my life as long as possible. I DON'T WANT TO DIE. Luckily, the chemo regimen I'm on now is shrinking my tumors. The last type of chemo I tried after my relapse did not work. I am elated this one is, but not stupid. I am only on my 3rd cycle out of 12. Each cycle everyday for 2 weeks for ANOTHER WHOLE YEAR. I don't know what will happen but I will live for the small moments of happiness and friendship and family and beauty as I know it. It's not ideal but it's all I got. I am more hopeful, for the first time since my relapse. I think, maybe I will get a chance to visit India again. Maybe I will date again. I don't know if it's going to bite me in the ass to have these hopes but I can't help it. For now, I am excited about my artwork and the exhibitions I will be a part of that will be coming up that are a very, very big deal to me. I'm getting the chance to tell my story the only way I know how and to reach others who might feel very alone, like I have. I know my work might seem like a bummer to a lot of people, but I'm showing cancer for what it is. I do not want to glamorize it. At the same time I want the viewer to end up feeling inspired and to have learned something. I'll be updating more about these shows soon. I'll be going into my 3rd year battling this bastard of a cancer. I can't believe it. That is a long ass time living like this. Is it living?.....not sure. There should probably be some other word for what is I'm doing, but I'm still here.

Thursday, May 16, 2013

The sun shines brighter now that I've finally got a bit of good news. For the past 5 months since I relapsed in January, something positive has happened. After finding out the last chemo wasn't working and my tumors were growing, I started getting realistic and have thought a lot about my death. I couldn't handle the heartbreak of another disappointment so I went into this one trying to be prepared/ not getting my hopes up and detaching as much as possible. Of course, I haven't been able to sleep and have had constant nightmares. I didn't really feel like talking to anyone and have had major anxiety about these life or death results.

My dad came with me to my appointment for my scan results before chemo. As soon as we got the good news that my tumors have all a shrank and there is no evidence of new disease anywhere, we both could just breath. I haven't felt like crying from happiness in so long. It's so nice to not have to think about dying every other second like I have been since my relapse. Obviously, I have ANOTHER long, rough year ahead of me of chemo. Another fucking year! Jesus. I don't know if its going to keep working or what is going to happen to me but I will take this good news and run with it. Living the way I have the past 5 months has been extremely unbearable. This waiting game. Not having to watch my dad cry from misery and actually out of happiness makes everything worth it. I have so much guilt about what my disease has done to my parents lives.

Unfortunately, cancer never lets you forget about how evil and powerful it is for too long. Right after my good news, I got bad news about my friend who just down the hall was fighting for his life. Things had taken a turn for the worst for him and they even gave him the death talk. Miraculously he has come out of it, but seeing him in so much pain and so sick really puts things in perspective and I was glad to have gotten good news so that I could really believe it when I was telling him to not give up and that as long as their is a regimen plan, something can work. Hope changes everything but becomes harder and harder to hang onto when you are repeatedly beaten down. But you take any glimmer of it that you get and it keeps you going.

All the pain in my body and hardships resulting from my cancer that are getting worse at least right now don't seem as bad in comparison to having unstoppable tumors growing inside me.. It's not like I'm in remission or anything. I just really thought nothing was going to work since nothing was. I wrote my funeral down last weekend. I thought every headache was the cancer spreading to my brain. That's really where I was at. Living like this for so long on these drugs and always being sick is a very hard life to live. My nueropathy is getting bad my hands don't work well and I am losing my mind: I cant remember anything and it is affecting my life extremely. Nevertheless, I feel like I'm appreciating life as much as I can, at least till the next scans in 3 months.

Our art show looks like its going to be great. It's going to be on August 13th in Soho and the first official meeting besides me and Kaylin brainstorming has taken place. It's the structure that I need in my life that has been missing. I need a deadline. I need a point. I miss working. While all my friends go to work, I go to chemo. We have to pick a charity and I am pleased with how many people want to be a part of this. We have so much talent behind this show with so much to say about something so important.

I also have been trying to push myself to live as normal as possible. I went to a couple art shows, saw some old faces and met some new ones. It is going to be great to give old friends a good update instead of trying to avoid the inquiring questions of doom. I saw my old boss, Francesco Clemente, a couple times last week and had a great time hanging out like old times and talking about life, art, and India. It was nice to hear from him how much he loves the paintings I've been doing!! This coming from one of the best watercolorists in the world! I've sold almost all of them and am just feeling like they are starting to express what I want to say about my journey in this cancer hell. My self portraits aren't easy for me to do. It is very liberating but also makes me feel very vulnerable sharing them. I've been so isolated though and they have truly been brought to life because of this isolation. I want to make sure that they don't glamorize cancer and really express what its really like. Cancer is not pretty. I want others who are sick not to feel so alone and others who have no idea about cancer to feel like they do a little after looking at them. I have a lot more to work on for this show but am so excited for it! It's nice to get to feel excited about something again.

About Me

Originally this blog only showed my paintings. Then cancer hit, and took over so much of my life. Since then I have become an advocate to help others understand what it's like for a young adult to live with cancer. Hopefully others like me will see this and not feel so alone. You might not like what you hear but its the truth. I don't know what I'd do without Art.